Perinatal care at the borderlines of viability: a consensus statement based on a NSW and ACT consensus workshop

Kei Lui, Barbara Bajuk, Kirsty Foster, Arnolda Gaston, Alison Kent, John Sinn, Kaye Spence, Wendy Fischer and David Henderson-Smart
Med J Aust 2006; 185 (9): 495-500. || doi: 10.5694/j.1326-5377.2006.tb00664.x
Published online: 6 November 2006


Perinatal care of the extremely low gestation and extremely low birthweight infant has improved. Although the boundary of viability has been challenged and has shifted over the past two decades,1-4 there is substantial risk of long-term neurodevelopmental disabilities in very premature babies who survive.5-9 A number of international guidelines on managing premature babies at the threshold of viability, formulated predominantly by physician expert panels, have been published. These guidelines acknowledge that, within boundaries set by birthweight and gestational age, there is a discretionary zone (a “grey zone”) in which attitudes of parents and clinicians play an important role (Box 1).10-14

The debate on management of neonates at the threshold of viability is an emotive and complex issue that involves families, clinicians and other health care professionals.15-19 In view of this, and in contrast with previously published guidelines prepared by expert panels, it was considered desirable to conduct a consensus workshop to bring together the views of multiple stakeholders, including consumers. The workshop, with participants from New South Wales and the Australian Capital Territory, had two aims:

The limits of viability have until recently been addressed in terms of gestational age or birthweight in relation to mortality and long-term outcome. The concept of a gestational “grey zone” was acknowledged by workshop participants as clinically more practical and relevant to perinatal care, as varying biological and clinical situations can render “cut-off” limits impractical and conflict-provoking.


In planning the workshop, the organising group was cognisant of adult learning principles.20 All participants would be actively involved and have experience of the dilemma in practice. It was crucial to achieve meaningful consensus by involving as many well informed stakeholders as possible, with a spread of urban and rural professionals as well as parents. Each of the 10 tertiary neonatal intensive care units in NSW and the ACT were invited to send professional delegates from five disciplinary groups (fetomaternal obstetrics, midwifery, neonatology, neonatal nursing, and developmental teams/other allied health professionals). Representation was also invited from parental groups, professional associations, medical and nursing colleges, and rural or regional clinical practices.

The workshop was held in February 2005 over one and a half days. The program included presentation of outcome data for very premature births along with ethical, parental and medicolegal viewpoints to stimulate discussion and to identify a preliminary grey zone.

Collection and analysis of NSW and ACT outcome data

It was agreed that the most relevant and up-to-date NSW and ACT survival and outcome data should form the basis for consensus discussions. The analysis included 897 births of premature infants between 22 weeks’ gestation (220) and 25 weeks and 6 days’ gestation (256) to NSW and ACT resident mothers between 1 January 1998 and 31 December 2000.

Follow-up assessments of the surviving children were performed at 2–3 years of age, corrected for prematurity. Most children were assessed at a tertiary centre, but about 10% who lived too far from a major hospital were assessed by their paediatrician or general practitioner. Assessments consisted of a neurological examination and a standardised psychological assessment (the Griffiths Mental Development Scales21 and the Bayley Scales of Infant Development, second edition22).

Categories of functional disability23 were defined as:

Workshop consensus statements

From 10 questions debated by 12 groups, a total of 40 draft statements were proposed, refined and voted on. Acceptance of over 90% was achieved for 26 proposed statements, with 17 receiving acceptance of over 90% across all discipline groups.

Final consensus statements derived from the workshop are shown in Box 3, Box 4 and Box 5. It was established early (voting results not shown) that factors including planned pregnancy, assisted conception, maternal age, maternal illness, antenatal complications and fetal conditions or compromise carried significant weight in the decision-making process. It was acknowledged that unexpected births outside tertiary perinatal centres are even more complex than births in major centres. The local team’s skills, time factors and transport logistical issues have a pivotal impact on the likelihood of a favourable outcome.

Defining the grey zone and implications for clinical practice

The case scenarios developed the most common presentations of premature labour in an otherwise uncomplicated pregnancy. Gestation was assumed to be known with reasonable accuracy.

Influence of certain factors on life-support decision making within the grey zone

Participants were asked to rank the influence of certain factors on making a decision about whether to resuscitate an infant born with a known gestation of 234 weeks. Parental wishes and condition at birth were ranked as the most important issues (Box 3). Other factors included birthweight and absence of congenital abnormality. The availability of resources was ranked the least important factor. Neonatal events that would influence the offering of withdrawal of intensive care included Grade III and Grade IV brain haemorrhage (ie, major intraventricular and/or parenchymal haemorrhage) (ranked highest), ventilator dependence at 36 weeks, and the presence of necrotising enterocolitis requiring surgery.

Antenatal communication

The incidence of prematurity is currently 6.7% in NSW and the ACT.25 The risk of birth within the gestational grey zone defined in the workshop is 1 in 100, which is higher than the risk for Down syndrome, about which mothers are more likely to receive counselling. The workshop participants overwhelmingly endorsed an effort for general education in the community regarding premature births (Box 4).


The perinatal care of women and their babies at the borderlines of viability is a complex issue that deserves much ethical debate and consideration.24-29 The risk of infant death or survival with long-term sequelae increases acutely with each weekly (and even daily) reduction in gestational age at birth.7-9 In contrast to guidelines developed by expert panels,10-14 our consensus workshop was conducted as an interactive forum involving well informed members of multidisciplinary perinatal care teams as well as community representatives and parent advocates.

In our workshop, the debate focused on perinatal scenarios and was based on the best antenatal estimation of gestational age rather than birthweight. While it is accepted that female premature infants generally have better outcomes, this factor was not included in discussions, as sex is not usually known before birth. Poor condition at birth correlates with early mortality and morbidity.30,31 Given the uncertainties surrounding very premature births, workshop participants stressed the importance of appropriate counselling in clinical practice and developing management plans before birth.

We took the approach of establishing a grey zone of borderline viability. The grey zones defined in previous guidelines (ranging from 22 to 28 weeks) are summarised in Box 1. Common to all guidelines, parental involvement was emphasised. Each suggested the use of institutional or local outcome data to establish more precise management guidelines within the grey zone. There are inherent pitfalls in generalisation using non-local NICU outcome data, as unique local factors may influence survival and long-term outcome. For example, a US study showed that non-white infants were more likely to survive than white infants, although they did not have a better developmental outcome.7 Furthermore, NICU collaborative networks that receive data contributions from multiple geographically distant centres show differences in outcome between centres.32

Our consensus workshop used regional outcome data that included all births, live births, NICU admissions, survivors and follow-up assessments. Participants’ responses to the case scenarios clearly showed a gradual increase in the acceptance of active intervention with increase in gestational age. Results supported the approach of defining a grey zone rather than a specific cut-off limit. Nonetheless, it was established that the vast majority (> 90%) of workshop participants would not wish to initiate active treatment before 24 weeks, and 100% would agree with parents if non-intervention was requested at this stage.

The hypothetical scenario of “no parental influence” explored the clinician’s own perception of or inclination for intervention. In reality, this scenario does not exist. Nevertheless, clinicians may encounter situations in which there has been limited opportunity for discussion, counselling or preparation of parents.

A complicating factor in the debate about management of extremely premature infants is that clinicians, nurses and parents tend to have differing views about the advisability of active intervention and the health-related quality of life of surviving children. Studies surveying parents of very premature infants and surviving teenage children who had themselves been extremely low birthweight infants (less than 1000 g) have shown that consumers (parents and teenagers) are more likely than health professionals to believe that treatment was worthwhile.33-37 Australian surveys38-41 indicate that neonatologists, neonatal nurses and obstetricians tend to underestimate survival and overestimate likely disabilities. Of the three, neonatologists’ estimates of outcomes are closest to the true picture.

Another issue is the degree to which outcomes are influenced by clinicians’ attitudes. It has been shown in a population-based comparison of two perinatal management strategies that proactive management is associated with better survival of infants born in the grey zone gestational age range.42 The workshop participants considered ongoing audit of outcomes and regular updates of information as essential.

The principle of non-directive counselling (and the difficulty of achieving it) was discussed during the workshop. In a recent survey regarding counselling of parents within the grey zone, substantial differences were noted between clinicians’ and parents’ perceptions.43 Although clinicians aimed to conduct counselling sessions in a non-directive way and believed they had done so, most parents perceived the experience as directive counselling.

Workshop participants agreed that consistent, transparent information should be shared between parents and members of the perinatal team. Information on survival and long-term outcomes of very premature infants was best provided in a written form available to parents. One outcome of the workshop was to update and revise — with substantial consumer input — the NSW and ACT parent information booklet for extremely premature births.44 The objective of the booklet is to provide simple and factual information written in appropriate language for parents. It is envisaged that these efforts will be of great benefit to the counselling process.

Participants also discussed whether all pregnant women should be given information about the risks associated with very premature birth. The incidence of premature birth at the borderlines of viability (1 in 100) is higher than that of aneuploidy. While it appears logical to provide consumer information on premature birth, its presumed benefits need to be evaluated. In contrast to aneuploidy, for which early detection and intervention are possible, there is no effective prevention or treatment for extremely premature birth. Participants suggested that all pregnant women should be given some idea of premature birth rates and information about symptoms of premature labour and other antenatal complications. Early medical attention may then be sought if these symptoms occur.

2 “Grey zone” births* and outcomes, New South Wales and Australian Capital Territory, 1998–2000

Gestational age at birth (weeks)






Total births in NSW and the ACT at gestational ages of 22–25 weeks






Live births (% of total births)

77 (36%)

89 (44%)

139 (60%)

176 (72%)

481 (54%)

NICU admissions (% of live births)

3 (4%)

48 (54%)

133 (96%)

158 (90%)

342 (71%)

Survival to hospital discharge (% of NICU admissions)


14 (29%)

66 (50%)

103 (65%)

183 (54%)

Median age at death, in days (range)

1 (0–4)

3 (0–134)

4 (0–163)

3 (0–54)

3 (0–163)

Infants with ROP requiring laser surgery (% discharged)


9 (64%)

18 (27%)

16 (15%)

43 (23%)

Infants with IVH Grade III or IV or parenchymal cysts at 6 weeks (% discharged)


1 (7%)

9 (14%)

11 (11%)

21 (11%)

Infants requiring home oxygen (% discharged)


8 (57%)

19 (29%)

32 (31%)

59 (32%)

Infants assessed at 2–3 years (% discharged)


12 (92%)

58 (88%)

96 (93%)

   166 (91%)   

No apparent functional disability (% assessed)


4 (33%)

33 (61%)

64 (67%)

104 (63%)

Mild functional disability (% assessed)


2 (17%)

6 (10%)

14 (15%)

22 (13%)

Moderate functional disability (% assessed)


2 (17%)

8 (14%)

6 (6%)

16 (10%)

Severe functional disability (% assessed)


4 (33%)

11 (19%)

12 (13%)

27 (16%)

IVH = intraventricular haemorrhage. na = not applicable. NICU = neonatal intensive care unit. ROP = retinopathy of prematurity.

* Births at between 22 weeks’ and 25 weeks and 6 days’ gestation.

5 Consensus statement: clinical approach within the “grey zone”

Within the gestational age range 230 to 256 weeks, when gestation is known with reasonable certainty, parents’ involvement in the decision-making process during prebirth counselling or subsequent management is mandatory.

Offer of active resuscitation and treatment at varying gestational ages

Where the family has opted for non-intervention at 23–25 weeks’ gestation

Where the family has opted for active intervention

  • Kei Lui1,2
  • Barbara Bajuk3
  • Kirsty Foster4
  • Arnolda Gaston3
  • Alison Kent5
  • John Sinn6
  • Kaye Spence7
  • Wendy Fischer3
  • David Henderson-Smart3

  • 1 Department of Newborn Care, Royal Hospital for Women, Sydney, NSW.
  • 2 School of Women’s and Children’s Health, University of NSW, Sydney, NSW.
  • 3 NSW Pregnancy and Newborn Services Network, Sydney, NSW.
  • 4 RPA Women’s and Babies, Royal Prince Alfred Hospital, Sydney, NSW.
  • 5 Centre for Newborn Care, Canberra Hospital, Canberra, ACT.
  • 6 Department of Neonatology, Westmead Hospital, Sydney, NSW.
  • 7 Department of Neonatology, The Children's Hospital at Westmead, Sydney, NSW.


We would like to thank the members of the Consensus Workshop Organising Committee and all workshop participants — particularly the parents, who contributed greatly to the discussions. Our external consultants included consumer groups such as Austprem, the Australian Multiple Births Association, MotherInc and Preemie-L; professional groups such as the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, the Royal Australasian College of Physicians (Division of Paediatrics), the Australian College of Rural and Remote Medicine, the Australian College of Midwives, the Association of Neonatal Nurses of NSW, the Perinatal Society of Australia and New Zealand (NSW Branch); and individual consumer representatives. We also thank the hospital directors, NICU members, audit officers and follow-up teams of all tertiary neonatal units in the following hospitals: The Canberra Hospital, John Hunter Hospital, Royal Prince Alfred Hospital, Liverpool Hospital, Nepean Hospital, The Children’s Hospital at Westmead, Royal North Shore Hospital, Sydney Children’s Hospital, Westmead Hospital and the Royal Hospital for Women. Finally, we thank the babies and their families, and the nursery, obstetric and medical records staff of the obstetric and children’s hospitals in NSW and the ACT.

Competing interests:

None identified.

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